just diagnosed with esophageal cancer

LorettaMarshall said:

Mona~Welcome 2 your new EC family~Lots of info for you!

Good evening Mona,

You’re yet another person we here wish we had met under better circumstances.    Yet we are all here with one thing in common.  Either we are actively being treated for cancer, or we are in remission.  And so you don’t have to describe “shock”—we’ve all had that as our first response to hearing the words cancer and finding our name attached to the report.  It’s that faint feeling, heart-racing, jolt of lightning, breathless, unbelievable moment when, after you “regain consciousness”, you say, “Can this be real?”  Have I got cancer?  Am I going to live or die?  Where do I go?  What do I do?   And then the search begins to find others who have walked this road before us, and been on the same roller-coaster ride, just on a different day. 

Funny how we usually define a roller-coaster ride as a heart-thumping, breathtaking ride, fun-filled and totally enjoyable ride—even though a bit scary at an “amusement park”.  And we actually paid money to get on it.  Here’s a photo of the wooden roller coaster both my husband and I rode as a teenager in Ocean View in Norfolk, VA back in the 50s.  https://www.flickr.com/photos/spartanfoto/6886737795/

The thrill of those rides lingers even now.  What a thrill!   The roller coaster has since been demolished—deemed too dangerous and rickety to ride.  By today’s daredevil rides, it makes our old amusement park ride look like a backyard skateboard ramp!  We never imagined that one day we would encounter another roller-coaster ride, that we didn’t ask to ride.  This one would not be at all thrilling—in fact rather “chilling” I would say.  This time the “fare” could actually potentially cost us our lives.  So as a very good friend described it, “Welcome to the Highway to Hell.”  Now that you’ve gotten your second breath and I’ve taken it away again, let me get on with things you will be needing to know about Esophageal Cancer. 

First of all, I have not practiced any holistic or alternative treatments for me or my husband.  I’m strictly conventional, but as long as your doctor okays it, have at it!  I do know several through the years that have used alternative medicines but never neglected the conventional ones.  Now I wouldn’t be wasting my money to take a trip out of the country to receive some kind of cure for cancer.  Save your money and time, and spend it wisely would be my advice. 

Mona, since you didn’t elaborate on how long you’ve been a lung cancer survivor, you might want to fill us in on that particular roller coaster ride.  You know cancer is an “equal opportunity” attacker.  And we know that Lung Cancer is the number one killer, so I know you are ecstatic in one sense about being able to count yourself as a “survivor”.  But now, not so with reference to Esophageal Cancer.  I have one particular fellow in mind that is very knowledgeable about lung cancer that has metastasized to the Esophagus.  But if you can’t reach him, we are still here, and we know pretty much anything you need to know about the basics of Esophageal Cancer. (Reference links are below my name as to some of his entries here on this forum.)  We also have another gentleman who posts under "DeathorGlory" (ED) who knows all about EC and Lung cancer, sad to say. 

Now that’s not to say we know “everything” because each person will have different problems on this rollercoaster.  They all ride in a separate “seat” you know.  Some will throw their hands up as they descend down the first steep dive and give up!  Others will grip the bar tightly and ride it out, and many will come out as survivors for a very long time.  Now there is one thing however.  There has been no cure found for Esophageal Cancer, so my husband and I are happy to say, “We are survivors” in remission, because there is always the possibility of recurrence in another major organ.  But we all do our best and hope for the best.

Mona, I’m glad you started your own topic line, so that we can more easily converse under the same heading.  Sometimes people are scanning this site for information, and when they find something pertaining to them, they will stop right there and post a question.  It may be a site that is 8 or more years old, and many times people are no longer active on that site.  So it’s always best for “newbies” to start on a “clean page”—that way the back & forth comments are all kept in one place.  So please continue to answer on the same topic line you posted on. 

Our most recent post, other than yours, came from “Mayflower18”.  Although we are still conversing on a separate link that she originally posted on, I put a separate link to respond in depth so others could find many places to research, if they too had been diagnosed with Esophageal Cancer. 

After my comments here, I will put some of them on this letter for you.  I particularly was interested in articles and/or clinical trials about those who had been diagnosed with Squamous Cell Cancer of the Esophagus.  Mayflower’s father will be undergoing an Esophagectomy in India.  Thankfully, there is a surgeon there that has been trained to perform the Ivor Lewis Minimally Invasive Esophagectomy, commonly known as the MIE.   But at the time of my writing, things were not quite settled.  It seems that the doctors there are still completing tests, but they believe the cancer to be early enough to not recommend the patient undergo neo-adjuvant (pre-op) chemo/radiation treatments.  So a date of June 20^th has been set.  Although her father has been diagnosed with Squamous Cell Carcinoma of the Esophagus, the treatments are the same.  (Usually Chemo/radiation & surgery if they are surgical candidates.  Palliative treatment regimens if they are not surgical candidates.)  The location of the tumor is the only difference.  Here in America today, most often the cancer is found at the junction of the Esophagus and the stomach.  It is called the “GastroEsophageal junction (GE).  Squamous Cell is located higher up in the Esophagus. 

My husband (at age 65) was diagnosed with Esophageal Cancer, Stage III (T3N1M0) back in November of 2002.  He underwent neo-adjuvant chemo and radiation here at home in Virginia.  Then we traveled to the University of Pittsburgh Medical Center.  There a Dr. James D. Luketich had recently pioneered a totally minimally esophagectomy that required only band-aid size incisions.  The surgery was performed on May 17, 2003.  Thankfully, my husband is now entering his 15^th year of remission.  We recently celebrated his 80^th birthday.  But truthfully, we celebrate our birthdays every day now, since we have both been diagnosed with cancer. 

And so for now, I will just say we are here to help in any way we can.  But our very FIRST recommendation, and we think it is essential, PLEASE HAVE A SECOND OPINION!  Note the article just published in April 2017 from Mayo Clinic.  You will be interested to know that so many “initial opinions” can be completely wrong.  And your life is too precious to take a chance on only one opinion.  So below my name are several reference links that you can access. 

Secondly, take notes along the way.  Ask for copies of all your medical scans and reports.  Learn to ask questions and expect answers.  Take the initiative and press the doctors for information.  They are busy, and will probably only tell you what you have asked about.  So arm yourself with knowledge and write down the questions as they come to mind while you’re studying up on Esophageal Cancer.  Also be certain that you are tested to see if you are HER2 positive.  Some patients possess a gene that over-expresses itself and causes the cancer to multiply more rapidly. HERCEPTIN is a separate drug given by itself, or in conjunction with chemo drugs.  It is very effective in cutting down on the rapid spread of the cancer.  “DeathorGlory”, one of our cohorts here can attest to that.  So “get smart” quickly Mona.  Knowledge will help to curtail fear in many respects. 

As always, I know all who will read your letter are wishing you well, as are we.

Most sincerely,

Loretta (& husband William)

(Loretta – Peritoneal Carcinomatosis/Ovarian Cancer Stage IV- Nov. 2012 & still on the roller coaster!)

William – Esophageal Cancer, Stage III, (T3N1M0) – MIE @ UPMC May 17, 2003 and still in remission with no recurrence thus far.

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1.  http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“If you’re diagnosed with an illness, you might want to get a second opinion.

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

• Only 12 percent of patients left the Mayo Clinic with the same diagnosis.
• In 21 percent of cases, the diagnosis was changed completely.
• In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.

How to ask for a second opinion

It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.

Here are some tips about seeking a second opinion:

– Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.

– When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.

– Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests gain.

– When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.

For more information on when and how to get a second opinion, click here.”

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Mona~

Often Esophageal Cancer patient’s cancer metastasizes to the Lungs.  However, we have also had one gentleman here who has shared his agonizing story with us about his “19-yr. long-term” survival from Lung cancer only to now learn that he has Esophageal Cancer.  He has had several opinions from some of the top hospitals in the country, and all with slightly differing opinions I might add.  There is no surgical procedure to “fix this” (Pat’s problem) so I think it would be helpful if you contact him so the two of you can “compare notes.”  He writes under “ECLC”.  You can send him a private message. 

2.  https://csn.cancer.org/user/260593

Here is Pat’s initial story in July of 2016:

3.  https://csn.cancer.org/comment/1547780#comment-1547780

 These are some of his replies. 4.   https://csn.cancer.org/comment/1548216#comment-1548216

Here’s his reply to “Ed”  -  5.  https://csn.cancer.org/comment/1559868#comment-1559868

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Also we have a gentleman here who posts regularly, who first had Esophageal Cancer, and is it now metastasized to his lung.  He has a different but amazing story of how he is surviving his recurrence.  I’m sure he will answer you as well.  Lung cancer patients can certainly identify with all the problems that it brings.  He writes under the tag:  “DeathorGlory”. 

Here is only one of his many helpful entries:

6.  https://csn.cancer.org/node/306058

You can “click” on his name in the blue block on the left side of this page.  Up will come an “about me” page.  There will be a place there to send private messages to that particular person if you wish.  Or you can put your questions out on the public forum.  Pat hasn’t posted here recently, so I’m not certain of his progress and/or treatments at this time.  But he, of all people can relate to your situation best. 

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My letter to “Mayflower18”, dated June 9, 2017, is extremely lengthy, but is filled with good web links having to do with Esophageal Cancer.   

That long letter can be accessed at this link: 

7.  https://csn.cancer.org/node/310120

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Here is another letter to “rjollie” in response to her letter about her brother that had just been diagnosed with Esophageal Cancer.  8.  https://csn.cancer.org/node/302187

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Here is another letter to “llohman” that has many different web links explaining Esophageal Cancer, along with tests, in order to reach a proper diagnosis. 

Check it out here: 

9.  https://csn.cancer.org/node/298664

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Here’s another reply to “Mister_eko”, who incidentally has now had a successful Esophagectomy!

10.  https://csn.cancer.org/comment/1548791#comment-1548791

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Here’s another one of my posts re Facts about Esophageal cancer: 

11.   https://csn.cancer.org/node/307099

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Thank you so much Loretta. The information shared with me is very helpful.  In answer to how long I have been a lung cancer survivor the first cancer was in 06 and the second in 08 they were two different primaries and both were low stage. I recently got the dx of stage three esophageal cancer.  Will b starting radiation and chemo on the 20th.